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Saturday, September 24, 2016

A unicorn no more



The last time I was sick put me in a bit of a tailspin. I managed to get through it without a hospital visit but when I went to a friend's house, because I was feeling low about being sick again, I ended up feeling worse. I felt worse because my friend felt the thing she should do was offer medical advice; things I should try because it had helped her in the past.

It was infuriating.

In my life people have told me things I should do to prevent myself from getting sick. As if I had not thought of those things in the 40 plus years I have lived with this chronic condition. They have offered teas, medications, loads of advice and sometimes blame-- as if I could control the sickness that upends my life.

Move around more one nurse told me the day after I was admitted with yet another bowel obstruction. I informed her that I had ran eight miles that morning before being hit with an obstruction in the afternoon.

Eat more fibre says someone else. Experience has taught me that raw fruits and vegetables send me to hospital as reliably as getting hit by a bus.

These are the things people and health professionals have typically told me all my life. They have told me these things because they have never met another person who has the chronic health problem that I am living with, have always lived with since birth. Neither have I until this summer.

After deciding that getting sick was becoming harder to take mentally after each round of obstructions I finally decided to seek help for the mental trauma that is caused by living with a time bomb in my own body. But talking to a mental health professional, while good, just isn't the same as talking to someone who knows what it is like to think of food as an enemy, to think of your body as a traitor, to know that at any moment everything your life will have to be put on hold. Arrangements will have to be made for your children's care, your job will have to be covered (meaning less money in your pocket), all plans must be shelved.


And you never know how long it's going to last; days, weeks, months...your life falls out from under your feet and all the while you know that somehow you are going to have to put it all back together again when you finally get better.

Everything stops and there is nothing you can do about it.

But the internet has finally given me answers and a community. This summer I found a group of omphalocele survivors, people who live with the same birth defect I have (a rare abdominal wall defect in which the intestines, liver, and occasionally other organs remain outside of the abdomen in a sac because of a defect in the development of the muscles of the abdominal wall). Not all of them experience obstructions like I do but we all have had health issues and worried about our ability to have children of our own (female survivors) due to complications from our condition.

Suddenly I was no longer a unicorn.

It is impossible to express how much this has changed my life – to know that somewhere out there people will understand what is happening to me, what I have lived with and continue to struggle against.

The understanding is just the beginning. There are also helpful suggestions from adult survivors- there are not that many-- on how to deal with obstructions and a dietary regiment that will help reduce obstructions. Contrary to what I had been told by the medical community all my life, what I need is a low-fibre diet, not a high fibre diet.

I followed this low-fibre diet advice while travelling this summer and felt so much better.

It may be hard for the healthy or the diagnosed to know what it is like to live with a serious health problem that is not understood and rarely known. I have explained my condition to health care providers, family and friends all my life; no one has ever not needed me to explain what was wrong with me. No one has ever said, “Oh yes, I know what that is.”

To finally find your community, to find people who can actually help; it's revolutionary. The world is different for me now and knowing this group is out there-- even if I never meet them in person-- marks a turning point in my life.

Throughout my life I have never met another O-survivor. I had never met a doctor who upon seeing my scar knew what it was.

But despite that I would consider myself lucky in the doctor department. Where I live now, in my hometown, my docs know my condition and they never hesitate to treat me when I present with an obstruction.

I have moved a lot in my life and had new doctors poke, prod and test for many hours before finally agreeing that my problem was a bowel obstruction and finally providing pain medication.

I was luckier than anyone has a right to ask for when I found a great abdominal surgeon in Bangkok – where I lived for almost a decade-- with my first hospital visit in the city to an obscure hospital not frequented by foreign nationals. It was the closest hospital to my apartment and just happened to be where Ajarn Suthep, who spoke excellent English and who had done his residency in upper New York state, practiced. He saved me from pain and torment on numerous occasions and saved my life on Christmas Day of 2003 when I presented with a obstruction that was turning gangrenous.

After 40 years this long road seemed to be getting longer. I hated being alone with this internal explosive. Finding this group was a lifeline I desperately needed. I don't comment much on the message board and I often find it difficult to see the children in the group who are now going through such horrible medical ordeals and harder still to see the poor children who don't make it into the O-survivor group; the O-angels.

I've been wanting to write this post for several months but the closer things are to the bone the harder they are to write.

I am so thankful to have found what I needed. I'm a unicorn no more and that in itself makes my life easier.  

3 comments:

  1. Samuel Matthew Alaish, M.D.
    Samuel Matthew Alaish, M.D.

    Assistant Professor of Surgery
    ... 12.Alaish SM, Strauch ED. The use of alloderm in the closure of a giant omphalocele. J Pediatr Surg 2006; 41(3):e37-e39. ...

    Appointment Phone
    410-955-5210

    Main Location
    The Johns Hopkins Hospital (Main Entrance)
    View Full Profile
    Out-of-State & International Patients +Meral Gunay-Aygun, M.D.
    Meral Gunay-Aygun, M.D.

    Associate Professor of Pediatrics
    ... Abdominal wall defects: gastroschisis and omphalocele High risk neonatology Grand Rounds , Cleveland (01/01/1998) University Hospitals of ...

    Appointment Phone
    410-955-3071

    Main Location
    Johns Hopkins Pediatrics
    View Full Profile

    ReplyDelete
  2. Lois! We're so happy you found us! How great that the low-residue diet is helping you. Isn't it strange how so many of us were told we were the first (or only) survivors our age? I guess without the internet it would have been too hard to create support groups with all of us being so few and far between; but it sure would've been helpful growing up and knowing of others out there like us.
    O-survivors unite! ❤

    ReplyDelete
  3. Lois! We're so happy you found us! How great that the low-residue diet is helping you. Isn't it strange how so many of us were told we were the first (or only) survivors our age? I guess without the internet it would have been too hard to create support groups with all of us being so few and far between; but it sure would've been helpful growing up and knowing of others out there like us.
    O-survivors unite! ❤

    ReplyDelete